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ocnprl

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Awakening is true Freedom!

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Indy, IN
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New Clusters, any idea? Please help!!
May 2^nd, 2009 at 1:15pm

Hi. Just came across this page, great!!
My name is Steve, and I've suffered from CHs all my adult life (decades). I've been in remission over a year, but when I got them, they ALWAYS woke me around 2am and the series done by 4 or 5am. I went into remission until a few days ago. The same or worse this time. Now, instead of 2-3 around 2am, they started in the evening/late evening and I'm having 4-6 a day...getting worse...I'm not ready for what's to come at all. I thought it was strange, for the first time, I'm getting double of what I used to get, and at a different time. Any ideas? So far, they are typical, much pain and getting worse. I switched drs. a year ago and told her about my CHs (I tell everyone I meet i.e. new girlfriends, close friends, etc. so they know what's going on when they start again. But this damn quack dr. I have refused to write me my prednisone script when I told her they're back. The bitch said I'd have to make an appointment to get them. I screamed at her partly out of fear of what's to come, told her a few weeks on prednisone is what I've always taken, but the bitch wouldn't budge. She went on vacation, and I can't see her for over a week.
I'm NOT ready for this ride! They are just getting worse. I'm already exhausted and the picnic's just starting!
Does anyone have any thoughts as to why they have increased in number, pain and times of day compared to the past? And does anyone have any suggestions as to how to deal with these? They are so bad and numerous this time around (and WILL get worse), I'm so desperate, for the first time I'm looking up support and came across this site. Please Help!!!
P.S. I'm glad I found this site. Finally, people who know what I'm going through.
Thanks. Shocked

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chrisw

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Re: New Clusters, any idea? Please help!!
Reply #1 - May 2^nd, 2009 at 1:42pm

Hi steve,
glad you found us. we are all here to support each other and you will find some great info also.

first, have you tried o2? it is not a preventative, but it is the best abortive out there, other than imitrex injections(but how many of those can you take? not many)

Your doc sounds like a jerk, and most nueros or headache specialists will move a cluster patient right to the front of the line if they know anything. Maybe you should start looking right away for a new doc. Prednisone can be a great help, but since you cant really stay on it for too long, usually a doctor will prescribe a tapered dose to give time for another med, such as verapamil, to build up enough to give you some relief.

Many of us on this site, have taken what we have learned here with us to our docs and demanded the treatment, many docs are clueless about CH, so be prepared to do your own homework.

there are also other things that can give alot of relief, such as ice packs or even heat for some. but without a doubt tryto get some o2 and read the links on th e side because you need to get the right amount, delivered in the right way for it to be effective. I know it sounds crazy, and too easy since its not a drug, but it really does work!!!

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BarbaraD

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Douglasville, TX
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Re: New Clusters, any idea? Please help!!
Reply #2 - May 2^nd, 2009 at 4:18pm

For about 70% of us it's O2 O2 and more O2.... But it has to be used properly to do good. The right regulator (high flow - 25 liter is the best) with the proper mask. Read the info on the left and if you have any questions ask them. Print out the info and take it to your doc and DEMAND O2. It's the cheapest and (in my opinion) the best abortative out there.

Red Bull (or other energy drink with caffeine and at least 1000mg of Taurine) at the first sign helps abort.

Melatonin at night before bed (9-18mg) helps get you thru the REM sleep and helps avoid the night hits, thus giving you some much needed rest.

The pred should be used as a taper and only to get a prevent in your system. It's not for long term use.

Imitrex or cafergot are the drugs of choice around here if the O2 doesn't work for aborting the demon.

Popular prevents are lithium, verapimal, topamax and a few others.

But give the O2 a try -- we all have to come up with our own "cocktail" since we all react differently.

Hope this will be a short cycle for you.

Hugs BD Kiss

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What don't kill ya, Makes ya stronger!

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JamesLF CH.com Newbie Offline I Love CH.com! Posts: 1	Re: New Clusters, any idea? Please help!! Reply #3 - May 2^nd, 2009 at 11:10pm Hello-Been suffering since Aug of 2005. Now they are becoming chronic. Tried prendisome, imitrex, depekote (worked for a while), now on divalproex. What else should I try? James
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: New Clusters, any idea? Please help!! Reply #4 - May 2^nd, 2009 at 11:47pm Welcome James.......see the 2 threads above this. Good info given by Chris and Barb.
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-johnny-

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fayette county ohio
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Re: New Clusters, any idea? Please help!!
Reply #5 - May 2^nd, 2009 at 11:57pm

JamesLF wrote on May 2^nd, 2009 at 11:10pm:

Hello-Been suffering since Aug of 2005. Now they are becoming chronic. Tried prendisome, imitrex, depekote (worked for a while), now on divalproex. What else should I try? James

what ever you do be sure to give it a week or so to determine whether it works. try not to take a bunch of drugs at once or mix a bunch of them in desperation. i know its tough but your on the track. i strongly recommend getting set up on o2. no matter how much you use you'll never overdo it. o2 will help get you through figuring out your meds. keep in mind we're all different.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: New Clusters, any idea? Please help!! Reply #6 - May 3^rd, 2009 at 12:02am steve i recommend that you fire your damn doctor. i also recommend setting yourself up with some welders o2 with a good regulator and a mask. with welders o2 you don't have some goofy doctor telling you no.
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Guiseppi

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Re: New Clusters, any idea? Please help!!
Reply #7 - May 3^rd, 2009 at 12:36am

Great info above, just want to second 2 things.

1: What Johnny said about the meds...go slow...work with your doc. Most of the prevents take up to 10 days to become effective. If I had only given lithium a week to work, I'd have abandoned my "silver bullet!" Blocks 70-80% of my attacks. But takes up to 14 days to build up in my system to the point it's effective.

2: get the oxygen. It'll make it much easier to be patient with your medications when you have the oxygen to beat the beast down!

Joe

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jesbri

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x0|Mason|USA||0|0|MI,Michigan
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Re: New Clusters, any idea? Please help!!
Reply #8 - May 6^th, 2009 at 7:43pm

Hi James, I wonder if there is something in the air this year. Mine have also been so much worse this year then they have ever been. I wish I could go back to my three weeks twice a year and call it good. The months I've had so far have taught me to give great respect to the chronics and learn as much as I can from them in case I end up that way.

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Inventive_Mind

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Portland, OR
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Re: New Clusters, any idea? Please help!!
Reply #9 - May 7^th, 2009 at 5:38am

-johnny- wrote on May 3^rd, 2009 at 12:02am:

steve i recommend that you fire your damn doctor. i also recommend setting yourself up with some welders o2 with a good regulator and a mask. with welders o2 you don't have some goofy doctor telling you no.

I second that motion, if your doc pulled this after you have informed them of your condition imagine what the future will hold. The welding setup has saved my arse, my insurance keeps canceling my O2 but thats ok I have ol reliable she not pretty but she knows how to treat a man .... I gonna get slammed for that comment I just know it Grin

~James

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There are no new ideas, just moments of divine clarity

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New Clusters, any idea? Please help!! Reply #10 - May 7^th, 2009 at 11:45am I have ol reliable she not pretty but she knows how to treat a man .... I gonna get slammed for that comment I just know it ~James Oh James....run son, run! Joe
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sylverstar

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albuquerque, nm
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Re: New Clusters, any idea? Please help!!
Reply #11 - May 8^th, 2009 at 3:45pm

Mine started out 6 years ago at 2 - 3 hits week. Then I quit smoking and they became 2 -3 hits a day. After 4 months I started smoking agin and they stabilized at 2 - 3 a day, where they stayed until I started taking Verapamil. At that point they went from 2 - 3 a day for an hour each to 12 - 14 hours each. I thought I was dying. It took 4 months to get the dosage up to par then taper back down. Once I was off the verapamil, they went back to their one hour but I was getting 3 - 6 a day. Everybody reacts differently to medications - in my case it seems that anything I tried made it worse. The oxygen is my main guy now and has been my only abortive for the past 2 years.

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